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10 months after being diagnosed with unprovoked vulvodynia and being told emphatically that there was nothing visibly wrong with my vulva, I’ve just come out of my referral with a consultant gynaecologist.

After introducing herself and getting a brief history from me, she got straight to examining me. Prodding around my vulva with a cotton bud, she asked where I could feel pain. I explained (for what must be the 50th time) where the pain is and gritted my teeth through the rest of the examination.

The consultant told me to get dressed and when I sat down she said immediately: “You have an abnormal vulva.”

Hearing those words was honestly the best piece of news I could possibly have hoped for. I have been convinced when I have looked at my vulva with a mirror that things did not look normal. I could clearly see inflammation in the most painful areas, but every time I went to the hospital for my appointments at the sexual health clinic, I would be told that there was nothing there.

The gynaecologist went on to explain that she has been looking at vulvas for 25 years and that mine does not look normal. She said doctors who do not look at vulvas everyday tend not to actually know or understand what normal is, hence the diagnosis of vulvodynia. She explained that the skin condition I have could well end up also causing vulvodynia, and experiencing painful sex definitely contributes to the vaginismus (which I also have).

I don’t think I can really put into words the the anger that exploded in my body at that moment. I have been through doctors telling me anxiety and mental health issues are tricking my body into being in pain. I have been prescribed pain medication that sent me into a state of depression for months. I have been made to feel like I am going clinically insane for examining myself and seeing red raw inflammation that doctors later tell me is how vulvas are supposed to look.

To hear that after 15 months my pain and suffering is most likely vulval eczema which can hopefully be treated in a matter of months with strong steroid cream…is almost more than I have the emotional capacity to cope with.

I have been unable to have sex pretty much full stop for the last 5 months, not taking into consideration the difficulties I was having before and forcing myself to endure. I have been walking around in agony in the wild hope that my “vulvodynia” would eventually disappear.

There is absolutely no doubt in my mind that had I been a cis man, my condition would not have gone undiagnosed for this amount of time. I am disgusted by the way that I have been treated by doctors, who refused to listen to me. I have been passed around professionals who are clearly unqualified to deal with gynaecological issues, many of whom have often had the bedside manner of a square of soiled toilet paper.

Of course the NHS crisis is a major contributor to this and I do acknowledge the immense pressure and stress that staff are under. I will not, however, excuse the misogyny evident in the contempt many medical professionals have had for the pain I have described and how they have examined me, what must be dozens of times, only to repeatedly misdiagnose me.

I feel such a sense of relief that I am crying as I write this: they are tears of fury. Fury at the misogyny that has put me through this, at the austerity that is destroying our NHS and for my own fucked up sex life and hatred for my vulva and vagina that has developed over the course of my ordeal.

I am writing this for anyone who has a vulva: demand to be listened to, trust your instincts and do not let male doctors pass off your pain as hysteria brought on by some phantom female anxiety.

Since my diagnosis of vulvodynia (which I wrote about in April) my situation has unfortunately continued to deteriorate. Each time it has felt like there has been some progress my positive feelings are swiftly shattered. The initial gratitude I felt for getting a diagnosis wore thin very quickly as I came to terms with the mammoth struggle I was up against, particularly at a time when the NHS is as under-resourced as it is.

After having seen the two consultants at the psycho-sexual unit, I started taking my daily 10mgs of amitriptyline. Even at this very low dosage, I immediately started feeling very tired. I decided to stop drinking for the first month or so of taking this medication having read about the extreme tiredness that alcohol brings on in many people who take amitriptyline – this left me feeling quite socially isolated and depressed at first but I thought it was best to allow my body to get used to the medication. Over the next few months the doctor gradually increased my daily dosage until I was taking 50mg per day. Once the dosage had hit 40mg, I noticed that the pain in my vulva had definitely dulled. I was no longer feeling pain when I sat down and the burning sensation was far less severe. The vaginal pain on penetration, however, was exactly the same – I still could not have sex. Despite the dulled vulval pain, I realised that this medication was really not working for me because every time I went on a night out it would get to the point where I physically could not keep my eyes open because I was so tired: I did not feel safe trying to get home at night by myself.

During these long months I slowly lost my sex drive almost completely. The fear of pain and the build up that I would have to go through mentally each time made any sexual interaction incredibly unappealing. What’s more, the vulval pain is unfortunately concentrated most around my clitoris and so I did not even want to touch myself, let alone let my partner. There obviously were some good days when I was able to have a sexual encounter but I generally found it easier to just avoid sex.

The effect that this has had on my mental state is difficult to describe, but I think the best I can do is to say that I feel like the vulvodynia has taken the old me hostage. I used to be sexually confident and happy where I now feel a deep sense of insecurity and anxiety. Even though I obviously have good days (because it would be too physically exhausting to feel how I do on my bad days everyday) I feel like most days I must numbly accept my unhappiness and pain, which I mostly do by filling my days with stuff – lots and lots of reading, talking (probably quite maniacally), doing work, writing, volunteering, going to meetings. I find small talk incredibly difficult in a way that I never used to. I often find myself sitting with people wishing I wasn’t there. I don’t want to make out that I have become some kind of social recluse, I haven’t, but I have become more socially anxious and find talking to certain people hard.

What really does not help is that lots of doctors like to tell me that being stressed can make the vulvodynia worse whilst they simultaneously do not offer me mental health support and say stuff like: “Ohhh poor you, it must be very frustrating. We’ll get there in the end”. After I burst into tears at my last appointment with the doctor at the sexual health unit (I am still confused as to why my doctor is here when vulvodynia is not a sexual health issue but a gynaecological one), he decided that I should start taking new medication, as the amitriptyline was not doing the trick. He prescribed me an anti-convulsant drug (Gabapentin) that is generally used to treat epilepsy. He told me that some women find that this can help because vulvodynia can make your vaginal muscles spasm and therefore your vagina tightens making penetration difficult. The downside to this medication is I now have to take it three times a day, as opposed to once as I had done with the amitriptyline, and thus far I can report no improvements. On the plus side, I no longer experience extreme tiredness or in fact any other negative side effects. Because of my crying fit, this doctor confusingly told me that I should go back to my GP to be referred for pelvic floor physiotherapy.

I went to said GP appointment this morning and was told to stop reading up on vulvodynia online or in books because overthinking it will make the situation worse. She did not seem to really understand what vulvodynia is (no surprises there) and was making all of the worst assumptions about vulvodynia being a result of my mental health. This made me want to fly out of my chair and punch her in the face but instead I just cried again and tried to calmly explain that the vulval pain has nothing to do with my anxiety, my anxiety is there because of the vulval pain. I managed to get her to refer me for physiotherapy but really she seemed like she wanted to bundle me out of the room.

What am I supposed to do? Wait the 3 months in between my appointments twiddling my thumbs, taking medication that does not help me? Of course I seek out help online because talking to other sufferers of vulvodynia has enabled me to find some respite and some useful information and advice. I feel like I am being passed around between medical professionals in the NHS who are too overworked to care about what I have been going through because I am not dying. It is getting to the point where I feel like I should seek out a specialist privately because this year and a half long process is dragging me further and further from the happy person I want to be.

Something surely has got to change – how can so many women be suffering in the same way with so little support? Waiting lists are at least 3 months long for most services and in between, I am left flailing around unable to speak to most people I know and crying intermittently to my mum or boyfriend. The sad truth though is that without serious funding for the health service, vulvodynia is going to be so far down the list of priorities that all health professionals can possibly do is chuck some medication at you and hope for the best.

The Harpy blog article posted in April is one of a few that have recently caught my attention (perhaps because of my own experience with vulval health) which have addressed the naïvety surrounding women’s sexual health care. Granted, I know nothing about other forms of genital healthcare, or how they are dealt with in clinics, health centres or even by specialists – I can only speak from my own dealings with Bacterial Vaginosis (BV). It’s hard to begin this article after wanting to write it down for so long – where to start?

Maybe I’ll put forward a hypothesis of a cycle – top down, funding for research into women’s sexual health is limited. Funding for medical testing, understandably, prioritises illnesses that affect a larger demographic (cancer, HIV etc.), but it is hard not to be frustrated that, although thrush and BV are ‘common’ conditions, they are much less manageable than the flu (from my experience anyway).

Since there is limited funding for the research which is desperately required, what limited empirical knowledge of vulval health is there for the doctors and nurses to learn? Even the NHS website admits not much is known about BV, for example. Due to this, women often get turned away with a pack of antibiotics and a ‘come back if it gets worse’ kind of attitude. Unless the problem is incredibly persistent, if you’re turned away more than three times say, you’re unlikely to go back for something like BV, which can be at times asymptomatic.

The sexual health clinic, doctor’s and the gynaecologist’s are supposed to be places where stigmatisation is irrelevant, so it can be hugely distressing when there is no clear antidote for such intimate issues, and when the people we often put our trust in are not confidant in their own diagnosis. This leads to the lonely road outside the clinic – apparently one in three women get BV, but I’d only heard about it as a mythical condition ‘you NEVER want to get’ because it makes your vagina STINK.’ Maybe because it is more prevalent for women of colour and, admittedly, my friends are unquestionably a majority of white middle class women, perhaps less of them have had it (as a condition experienced by many black women in particular, I want to refer everyone to the gal-dem article that really spurred me on to write this one, which also addresses how BV is misunderstood in sexual relationships).

I didn’t know it had a name. I didn’t know anyone who had it until I was open about it. I imagine this is because of a combination of the nature of the condition (an embarrassing smell) and the alienation of the professionals that leads women to hide it, which is an incredibly self-isolating reaction that has only ever led to the detriment of mental health.

I was shocked when friends I talked to openly about menstruation, masturbating, sex, sex, sex etc. only ever told me about their BV experience once I, in my unwavering need to talk my issues into the ground, was open about the gory details (which incidentally are not that gory…)

So in the spirit of sharing and finding my ultimate platform to really get to grips with the issues, I’ll just now go into my own story which I hope finds resonance with other people’s experience.

Around August last year, having been consistently sleeping with the same person for a few months, I went straight to work from his house one day after not using a condom (mistake 1), unshowered (mistake 2) and felt a familiar sensation of slight irritation. As the day went by, this became a burning pain. When I went to the loo, I noticed an unfamiliar and alarming – yes, fishy – smell that immediately made me panic. I was working 9 to 6 so couldn’t do anything about it, but I was close to tears by the end of the day. On the way home, I got off the bus because I thought I could smell myself and was embarrassed in case other passengers could smell me too.

At work I’d been going over in my mind what the fuck could be happening to me – I’d been having unprotected sex, which had been a conscious choice because I trusted the guy and was on the pill and knew I was safe from STDs. So, I’d had a bit of discomfort after sex because of his cum, but something had changed this time. Basically I FREAKED THE FUCK OUT – I might have the unnamed ‘disease’ that everyone said you should avoid. By the time I got home I was on a mission – laptop, internet, ‘what the fuck is wrong with me?’ Answer: ‘Thrush or BV.’ ‘What can i do?’ Answer: ‘Apple cider vinegar’. So, it being the end of a Saturday and not being able to go to a pharmacy or anything immediately, I did the best home remedy that I found online and poured some apple cider vinegar in a bath. This caused some relief, but was the first of a long line of home remedy attempts.

Interruption for life lesson – USE A FUCKING CONDOM.

BV is not an STI but believe it or not there is a pH imbalance between cum and vagina, the former is alkaline the latter acidic and far more sensitive. I think probably a bit too much alkaline ultimately fucked me up. I didn’t really know this was what I had until I went to the sex clinic on the Monday, I was given the antibiotics, reassured that it was nothing ‘more serious’ – as in not an STI – and felt relived that in a week I should be cleared up. Sidenote – this was the first time I had slept with someone for longer than a week so I was pretty excited to say the least, and. as you can imagine, totally bummed out that this was happening, and I think it also began the winding down of this summer tryst – not very helpful for a girl’s self-esteem. Smelly fanny. End of sex – mutually exclusive or cause and effect?

Flash forward – my first bout of antibiotics helped with the burning immediately, but the smell and and inane consciousness of my vagina’s presence was persistent. I then went to the pharmacy and bought some Canesten pH balancing tubes – again, some relief, but messy AF and a faff to insert. I’ve now also used the Balance Activ pessaries AND tubes and a Canesten test to see if you had thrush or BV – basically all bogus. Granted friends have had some success with these, but not lasting. I went back to the sex clinic and happened to see a gynocologist who said it was gone. So I was like, ‘Great I can drink and have sex, woo!’ Wrong. From this point on I was on and off different kinds of antibiotics at least four times – higher dosage, longer dosage etc. Once these were ineffective I explored the internet again for more specific home remedies.

The online presence of women with vulval problems is, to say the least, extensive – especially for BV. Hundreds of women on family forums and chat rooms have shared their experiences and I did not feel any better for it – just far more angry. Some women had been dealing with the condition for decades. DECADES! Some, at this point, had made drastic life changes such as no sugar, no alcohol, no caffeine, or no dairy diets, that may or may not have worked. Very few women would follow up on their hypothesis online and, if they did, it usually went like this: 1) ‘Gonna try [insert insane home remedy such as vitamin C tablets in the vagina] tonight, I’ve heard good things, and I really think it will work.’ 2) ‘First day in and it’s going really well so far, smell’s pretty much gone, I just have funky discharge, I might do a week and stop,’ 3) ‘Guys I’m so upset I stopped using [insert home remedy] and the smell has come back! I don’t know what do!’

Basically all of these ‘remedies’ are totally impractical and any benefits, at risk of further harm, are short term. Some of these I’ve tried, such as the afore mentioned vitamin C tablet insertions (worked for a friend, not for me); garlic cloves inserted in the nether regions at night (worked whilst I used them but so much hassle – no longevity); one brief stint with hydrogen peroxide (highly recommended online – total bullshit, painful and messy); no sugar diet (just boring AF made little to no difference).

What worried me a lot was after finally seeing a proper gynaecologist she didn’t flinch at these obscure and potentially harmful self-treatments. Basically, it means that she couldn’t offer anything better than these experiments. Granted she thought I didn’t have BV anymore (although she didn’t take a swab – hmm…) and actually suggested I might have a kind of reactionary vulvodynia, which I don’t believe I have (although lack of penetration, tampons or otherwise, means I can’t really tell). I was totally unsatisfied with her diagnosis and am frustrated that I’m still dealing with this shit almost a year later after it started. THERE IS SOMETHING INHERENTLY WRONG WITH MY VAGINA! Why can no on see it?

After seeing my GP several times, more blood and urine samples, an ultrasound to check whether there is anything wrong with my bladder since I’d had the sensation of a UTI since contracting BV, (which I thought was part of the condition but might have been a side affect – who the fuck knows) the end is not in sight. I have an appointment with a different gynaecologist coming up soon who I will grill, but apart from just getting used to a dull heaviness in my belly and the knowledge that I am unlikely to let anyone near my vagina again (to subject them to the smell or make it worse) there is not much I’m willing to do anymore.

What I have found valuable over the last year is really getting to grips with the different ways my friends are also suffering – polycystic ovaries and their symptoms, UTIs, chronic thrush, relapsing BV, contraceptive side affects – which are physically and mentally detrimental. I’m terribly sad that despite knowing my friends are very open about their bodies, the complicated and dismissive journey to receive a correct and reassuring diagnosis and treatment is incredibly isolating. Without comparing to those suffering diagnosed mental health issues, the emotional upheaval, however irrational, was extreme. Personally I found it incredibly difficult to get over the crippling self-consciousness I experienced, the thought that I would never find a partner who would not be completely curtailed by my odour, never feeling clean even though I showered everyday, not wanting to get dressed fearing that my clothes would smell, barely having the motivation to leave the house (granted for me combined with moving city and re-entering education) – whilst this sounds over dramatic and self-indulgent a close friend with the same condition and the scores of women present online show that this is not an unfamiliar state. Some individuals admitted they were so self conscious, even with their partners, that if they did have sex (often because they FELT BAD FOR THEIR PARTNER) they would only have sex in the bath or shower. How is it possible that a ‘common’ condition can leave women feeling so utterly helpless and insecure to the point of jeopardising their relationships and preventing them from living daily life?

I wish I could properly pinpoint where it’s going wrong – Patriarchy? I mean women have had vaginas since the beginning of time, so why do they continue to be a mystery? Especially since they GIVE LIFE.

All I can say is I feel privileged to share my experience and that I hope it resonates with some readers, not only to encourage them to share *cheese*, but for others to not be so discrediting when someone wants to open up. Again, I’m privileged that my friends are happy to hear the gritty details of my sexual organs but I also have other friends who have been received with unhelpful reactions – without negating the experience of thrush, having it once, sadly, is not the same as having BV for two years and if you haven’t had it, or vulvodynia for that matter, you probably do not know what it’s like in the same way that I having had BV will NEVER know what it’s like to have endometriosis or polycystic ovaries. BV is just one way of entering the deep dark convoluted realm of mysterious vaginal complications.

I’m not sure I’ve even fully articulated how this last year has been for me, or the incredible online presence of other such isolated women, not to mention that, if this is my experience (middle class white woman in a ‘developed’ country), what kind of situation is it for those where the healthcare systems are few and far between if existent?

Food for thought, if not an argument for some sort of initiative towards better women’s healthcare through research.

Some time last year, I went to the sexual health clinic with the usual symptoms of vaginal thrush – a change in discharge, itching and discomfort. I was seen by a doctor, examined and given the suitable medication for what was, indeed, thrush. My vulva soon returned to its normal state, and I continued my life as usual.

A few months later, I again started to experience what I believed to be the symptoms of vaginal thrush. I had a quick google and reluctantly decided that I should probably go to the sexual health clinic, again (admittedly mainly because they give you the medication and cream for free). I waited the usual hour at the drop-in and was examined by a nurse. When she inserted the speculum I cried out because it hurt and held back the tears that pricked my eyes. She said that she couldn’t see any symptoms of thrush and that, this time round, it was actually my cervix that looked red and inflamed. The nurse told me that I shouldn’t have sex until the pain had reduced, and that the discharge was probably something to do with my inflamed cervix. I left the clinic feeling confused and still experiencing pain and discomfort.

My symptoms of discomfort and burning did not go away, despite abstaining from sex. After a while, I decided that I would, again, return to the sexual health clinic. I waited the hour once more, and this time was seen by a doctor. I explained my symptoms and told her that I still thought it could be thrush and that I was worried about the pain I had been in for the last few months. The doctor was very understanding and decided she needed to examine me. I endured the pain of the speculum once more and was again told that my cervix was inflamed. When I told her that I only really experienced pain internally during sex, and that what I was concerned about was the pain around the entrance to my vagina, she said there was no obvious inflammation of my labia. I was reassured by her that the redness of my cervix was not a serious issue and sent away.

I performed this dance at my local sexual health clinic three more times over the next four to five months, one of the (male) nurses I saw during this time even had the audacity to say, “You know sometimes sex can hurt when you are not in love.” I even went to the sexual health clinic attached to my local hospital, where I was examined by a consultant, with no result.

I eventually broke down in hysterical tears to a nurse about the pain I was in. He looked at me, wide-eyed and unsure of what to do as I wailed “Nobody will help me,” and sobbed uncontrollably. He eventually went to get another woman nurse, who seemed irritated at his lack of resourcefulness, and offered to examine me. She said that I had been rubbing the painful area of my labia so much that it was red and raw and gave me some soothing cream and aqueous cream to wash with. It was only at this point that they finally referred me to the specialist psychosexual unit at the local hospital. Living with pain everyday had become normalised during all the months it took for me to finally get this referral.

After more than six months of sexual health drop-in clinics and GP appointments, I arrived at the hospital for my appointment with both a consultant and a psychologist. I was quizzed about every part of my sex life, my mental health and lifestyle. Deep down, I was uncomfortable at detailing intimate elements of my sex life to two strange middle-aged men, mentally flinching when they asked me how often I masturbate, but I performed my role as practical, open and relaxed patient, eager to get my appointment over and done with. Both doctors were very nice, but I was never given the option of seeing a woman consultant or being examined by a woman – the best they can offer you is a woman chaperone.

After the grilling and a further vaginal examination, the consultant diagnosed me with unprovoked vulvodynia. He assured me that I had done well to seek out medical support as quickly as I had, as many women endure the pain of vulvodynia for years before going to see their GP. He also informed me that lots of women report symptoms of vulvodynia after experiencing a couple of serious bouts of thrush, which I had never heard anyone talk about before. They gently started to explain the various treatments available, from medication to therapy, and I tried hard to conceal the fact that they had just smacked me in the face with a bag of bricks.

Vulvodynia is persistent, unexplained pain in the vulva which can be long-term and chronic, but the doctors assured me that much can be done to relieve the pain. It is not an STI, it is not infectious, it is not related to cancer and you cannot pass it on to a partner. In my case, unprovoked vulvodynia means that my pain is burning, sore and spontaneous in nature – it is not touching that causes the pain, it is there all the time.

I told them I was grateful that I had a diagnosis, but really, I felt worse being diagnosed with a long-term chronic pain issue than I had when I assumed the doctors were just missing some kind of skin condition. The doctor prescribed me medication that, in higher doses, is prescribed for depression. The reason for this being that the medication alters the way in which nerve fibres send their impulses to the spinal cord and give the sensation of pain. I remembered that there was once an episode of Sex & the City where Charlotte is diagnosed with vulvodynia and told she is going to be prescribed a “Light anti-depressant…for [her] vagina.” I want to smack whoever wrote this episode of Sex & the City into oblivion.

I left the consultant’s office, feeling numb, to go and pick up my medication from the hospital pharmacy. I cried quietly on a squeaky plastic chair in the waiting room and then got on the bus home. I felt stupid for crying and pulled myself together for the phone call to my partner. I explained that I had been prescribed this medication and that, hopefully, in a few weeks time, it would start to work and the pain I was in would be reduced.

Obviously when I got home the first thing I did was to google both Vulvodynia and the medication I had been prescribed. I found the encouraging news that the drug I am now on (amitriptyline) is effective for pain relief in 1/4 people, which is apparently very high…let’s hope I’m in that 25%. I also scrolled through various websites about amitriptyline where the warning DO NOT DRINK ALCOHOL as dangerous side effects or death can occur, was a consistent piece of advice. Amitriptyline also makes you drowsy, and I’ve been waking up in the mornings with a feeling similar to a hangover.

I am only in the first week of taking this medication and I know that it will take some time for doctors and/or psychologists to help me deal with the pain, but I cannot get over the amount of doctors visits it took for me to get the referral in the first place and that this actually only came after I sobbed hysterically to a bewildered nurse. GUM clinics are so stretched and understaffed that there was rarely a doctor there who was able to see me. This resulted in a cycle of being seen and made to leave with no diagnosis and no pain relief (ibuprofen and paracetamol do not work to relieve the pain of vulvodynia).

There is also the effect that this ordeal of almost a year has had on my mental health and sexual confidence. I have developed a level of anxiety around penetrative sex that I never had before, and sometimes it is too uncomfortable to have myself or another person even touching my vulva. I also never imagined that I would have had so many strange men examining and peering at my vulva, and how unpleasant I would find that experience.

I am hopeful that I will be able to take steps to relieve the pain that I’m experiencing over the next few months, but if I had been fully aware of what vulvodynia actually was, perhaps I would have been able to go to doctor with the vocabulary to explain my symptoms and have the confidence to ask for the help I needed. From my experience, there can be a distinct silence when it comes to the treatment of women’s sexual health. The difficulty, though, was that my inflamed cervix (which doctors did notice) had nothing to do with the vulvodynia. I believe this issue may have confused how I described my symptoms to doctors, but even so, it should have been picked up on that I was in physical pain with no external symptoms, given that I sought out medical help roughly ten times for the same issue.

I am ultimately thankful that I now know what is going on with my vulva and hope that my experience may help the up to 15% of women who have vulvodynia, and that it could also be a useful tool for those who will most probably never have heard of vulvodynia before. I found this website useful and have also discovered that there are vulvodynia groups on Facebook, including one for partners of women with vulvodynia.

My vulvodynia journey stretches on…hopefully it won’t continue to be this painful.